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Re: Digest Number 2807

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From: Karlajoy@...

even with

> the little bit of cheating that is involved so much so we'd never " go

back " .

am I going to get in trouble here with some of you. thanks. "

I would hope no one would condemn. All kids are different and if that seems

to work for your child, then great! We are really all involved in a lot of

trial and error after all. I was wondering how long you've been on diet. For

us at 3 wks on, an infraction (big time) Saturday was horrible. Curious

whether it eases up the longer you are on it?

Laurie in AZ (who has learned this cut/paste thing now)

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In a message dated 3/6/01 4:13:45 PM Central Standard Time,

GFCFKids writes:

<< Does anyone know if they ever found the 6 yr. old autistic boy in South

Carolina who wandered off early Sat morning? It bothers me when I hear

about stuff like that and theres no update. I guess there's nothing to

report either. That may be the case. I just wonder if he has been found.

It's so cold in SC right now and all he had on was a shirt and shorts. Any

news?

>>

I keep checking the websights of ton, SC -newspapers, news etc. and

they are still looking as of this morning. I did read that there is a LOT of

water in the area- and that has me up at night. I know there are people who

say " Well at least Autism in not fatal " but the fact is- sometimes it is and

if this boy dies as a direct result of his autistic behavior I think we need

to get a Nationwide campaign going even stronger than what we have to PUSH

PUSH PUSH for more reseach, more funding more EVERYTHING involved with

finding a cure and getting better intervention for Autism. This could be ANY

of our own children!

PEG

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In a message dated 3/6/01 4:13:45 PM Central Standard Time,

GFCFKids writes:

<< Any insurance company you know of

have better coverage for medical, OT, speech, ABA.... etc....

>>

I know that many families qualify for Medicaid and don't know it. The HMO'S

through medicaid cover everything and sometimes there is a copay involved but

it is slight. If you have private insurance and still qualify they will pay

the deductibles, cover anything the private insurance does not pay (the 20%)

and pay the premiums also.

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We've been on it for a year now and the last time my son ate something taboo

he was off the wall. He wrote on the doors with black markers and poured hot

wax from a candle all over the sink in the bathroom ( which is not anywhere

near his usual behavior) was laughing at me and acting like he was very

drunk. It was sad to see him like that cuz that's the way he used to be all

the time. I could tell that he didn't understand why he was doing those

things either. For us we go 100% because even a little bit seems to do big

things for him.

P.S. It took a week before the behaviors came out. I thought maybe he was

cured until that happened.

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The reactions either got worse for us the longer we are on the diet, or she

has just gotten so much better that it makes them that more noticeable. So

for us, and she has been casein free for 5 years and gluten free for almost

1, they have not gotten any easier.

> From: Karlajoy@...

> even with

> > the little bit of cheating that is involved so much so we'd never " go

> back " .

> am I going to get in trouble here with some of you. thanks. "

> I would hope no one would condemn. All kids are different and if that

seems

> to work for your child, then great! We are really all involved in a lot of

> trial and error after all. I was wondering how long you've been on diet.

For

> us at 3 wks on, an infraction (big time) Saturday was horrible. Curious

> whether it eases up the longer you are on it?

> Laurie in AZ (who has learned this cut/paste thing now)

>

>

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> >>

> through medicaid cover everything and sometimes there is a copay involved

but

> it is slight. If you have private insurance and still qualify they will

pay

> the deductibles, cover anything the private insurance does not pay (the

20%)

> and pay the premiums also.

Medicaid will also cover the copays of your private insurance. We kept both

on our dd. But if your child qualifies for Medicaid make sure that you get

it qualified on disability and not all income based. Our dd qualifies for

SSI and Medicaid but the Medicaid was thru the SSI and was income based. If

she lost SSI because of our income she would also lose the Medicaid. If the

Medicaid is disability based then the child would still have the insurance.

Believe me, I know! Still trying to get it all straightened out!

ElaineF

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> >>

> through medicaid cover everything and sometimes there is a copay involved

but

> it is slight. If you have private insurance and still qualify they will

pay

> the deductibles, cover anything the private insurance does not pay (the

20%)

> and pay the premiums also.

Medicaid will also cover the copays of your private insurance. We kept both

on our dd. But if your child qualifies for Medicaid make sure that you get

it qualified on disability and not all income based. Our dd qualifies for

SSI and Medicaid but the Medicaid was thru the SSI and was income based. If

she lost SSI because of our income she would also lose the Medicaid. If the

Medicaid is disability based then the child would still have the insurance.

Believe me, I know! Still trying to get it all straightened out!

ElaineF

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In a message dated 3/6/01 5:48:47 PM Central Standard Time,

renee1dat@... writes:

> So for us, and she has been casein free for 5 years

and anyone else who would like to respond:

My son has been gfcf for a couple of weeks now, being off of casein for

nearly 3 weeks. How long was your daughter off casein before you noticed

improvement? The only change I've seen in my son so far is crankiness from

what I believe to be hunger. He has a lot of sensory issues that prevent him

from eating food that is unfamiliar. Right before we started the diet, my

son complained whenever I gave him milk because he wanted juice instead. He

was refusing it either because he just liked juice better or because of how

it made him feel. I don't know which. No bm trouble. Actually, since

starting the diet, his regular once-a-day bm has turned into once every 2 - 3

days.

Kim

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We saw improvements within days. I'm not sure how old your son is, keep in

mind was 28 months when we removed casein. At the time she had daily

screaming fits that lasted hours upon hours, had no speech what so ever,

spent most of her time breaking stuff or hurting herself, ran away

constantly, and felt no pain at all. We realized this when she broke some

glass, cut her fingers all up trying to put it back together like a puzzle,

and was oblivious to the fact she was bleeding everywhere. On her second

birthday she spent the evening in the hospital for picking up, and dropping

a 19 in T.V. on her leg. It swelled to twice its size (her leg), and she

never flinched. When we took her to the hospital she running around the

waiting area like someone on drugs. This is when the Dr.'s began listening

to us! She went from this bad to verbal, although no one understood her but

me for quite some time, and her screaming fits were down to less than an

hour within 10 days of removing casein. Unfortunately she was still

diagnosed autistic at age 3, and we did not remove gluten until age 6. That

was almost a year ago and they are removing the label of autism- Today she

no longer meets the criteria unless we have a food infringement. So for us

there is no doubting the opioid theory, and we are anal about what she eats.

Around here we do lose it if she gets ahold of the wrong foods. We are to

the best of our knowledge 100%, and not planning any challenges. I have

heard others, especially those with older children, not get the same results

we did, or the results take more time to appear. I don't know if the diet

works for every autistic child, but I do know that for ours it will not work

at 95%.

>

> and anyone else who would like to respond:

> My son has been gfcf for a couple of weeks now, being off of casein for

> nearly 3 weeks. How long was your daughter off casein before you noticed

> improvement? The only change I've seen in my son so far is crankiness

from

> what I believe to be hunger. He has a lot of sensory issues that prevent

him

> from eating food that is unfamiliar. Right before we started the diet, my

> son complained whenever I gave him milk because he wanted juice instead.

He

> was refusing it either because he just liked juice better or because of

how

> it made him feel. I don't know which. No bm trouble. Actually, since

> starting the diet, his regular once-a-day bm has turned into once every

2 - 3

> days.

> Kim

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After going casien free my daughter became constipated for a few weeks--not

uncommon. Kids also begin to be less sensitive to new foods once on this

diet--not ALWAYS but often makes them more open to a broader range of foods.

It can take some time to notice improvements . Gotta get all out of his

system. And then gluten eventually too will help you see more improvement

as well. Good luck with diet. Gets easier w/ time, :)

Re: Digest Number 2807

> In a message dated 3/6/01 5:48:47 PM Central Standard Time,

> renee1dat@... writes:

>

>

> > So for us, and she has been casein free for 5 years

>

> and anyone else who would like to respond:

> My son has been gfcf for a couple of weeks now, being off of casein for

> nearly 3 weeks. How long was your daughter off casein before you noticed

> improvement? The only change I've seen in my son so far is crankiness

from

> what I believe to be hunger. He has a lot of sensory issues that prevent

him

> from eating food that is unfamiliar. Right before we started the diet, my

> son complained whenever I gave him milk because he wanted juice instead.

He

> was refusing it either because he just liked juice better or because of

how

> it made him feel. I don't know which. No bm trouble. Actually, since

> starting the diet, his regular once-a-day bm has turned into once every

2 - 3

> days.

> Kim

>

>

>

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